Lil’ Joe
Written by Joe & Kristin
Joseph (Joe/Lil’ Joe) Thomas Dolezal was born on April 24, 2023, at 4:45 pm, almost exactly one minute before his twin brother, Jude Russell, at Methodist Women’s Hospital. Due to rising complications with mom’s (Kristin’s) health, the boys had to make an early appearance at 35 weeks and 3 days. Despite their early arrival, Joe weighed in at 7lb, 4 oz, with Jude weighing 6lb even. Their size did not keep them out of the NICU, however, as their lungs still were not developed enough to function without assistance. Both boys ended up in incubators with CPAP but they weaned off breathing assistance like champs.
On about the third day in the NICU, one of the doctors noticed a murmur while listening to Joe’s heart on morning rounds. After consulting with his colleagues, they took Joe in for an ultrasound and noticed he had a hole in his heart (VSD). They told us this was not completely out of the normal and that some close with time, however Joe’s hole was in a spot where they were not sure if it would close on its own and further monitoring was going to be needed. They set us up with an appointment in June with cardiologist Dr. Jennifer Winter at Children’s Nebraska for a follow-up.
Joe was able to graduate from the NICU after 11 days, 2 days before his brother. Joe and Jude were welcomed home by their brothers Connor and Nathan and sister Alexis and our new normal of constant chaos with newborn twins began!!
Joe’s first follow-up with Cardiology was on June 22. After another round of tests showed there was minimal change in the VSD, however, it was revealed there were deeper issues. Dr. Winter noted in addition to the VSD, Joe had a Patent Foramen Ovale (PFO) and there were mitral and aortic valve issues. The valves were misshapen and not functioning correctly, so the blood flow in the heart was not optimal. She also noted that his aorta, specifically at the aortic arch-the curved section of his aorta-had irregularities to it. These symptoms together came with a diagnosis of Shone’s Complex. At this point, the test results were a little challenging to interpret and the prognosis was unclear, but we were told what symptoms to be looking for: difficulty breathing, excessive sweating, and any discoloration in his skin. At this point, it should be noted his blood pressure readings were significantly lower on his legs compared to readings on his arms and there was difficulty finding a pulse in his feet. Thankfully, Joe was a happy baby, growing and acting normally and free of the key symptoms to look for.
Joe had another follow-up appointment on July 20. Again, the VSD had minimal change, but the function of the mitral and aortic valves showed improvement. It was also noted there was much more irregularity in the aortic arch. Dr. Winter was not sure what the next steps would be but thought intervention would be needed further down the line. It was at this point we found out that the cardiology group discusses cases as a team on Fridays and they come to a group conclusion on the next steps with their patients. Dr. Winter said she might present the case the next morning and she would let us know what the next step would be at our next follow-up.
On July 21, we got a call: Joe is going to have surgery soon. On July 24th, the surgery date was set for August 9th. We were in complete shock. There was no time to process what was going to happen at this point. We were told that we could not let the aortic arch develop like this any further. Any delays could cause developmental issues or lead to a stroke.
Due to a family emergency with the surgeon, Joe’s surgery was delayed a day. On August 10, 2023, our brave little boy became a Heart Hero after a successful 6-hour open-heart surgery by Dr. Ram Subramanyan. During this surgery, Dr. Ram corrected the VSD and PFO and used cadaver tissue to repair his aortic arch.
The ultimate issue at hand with his aorta was his arch was starting to kink up and there was an opening the size of a pencil eraser for the blood to pass through. His heart had to work harder to push the blood through the small opening, leading to increased blood pressure and decreased blood flow to his lower extremities.
Seeing Joe post-surgery was overwhelming. Our sweet little angel was connected to so many machines through various tubes. Despite this setback, he recovered like the Boss Baby he has come to be known as. The only issue he had was some minor fluid buildup behind his heart, which extended his stay by a few days. After 10 days, Lil Joe was released to go home.
Further follow-up visits showed that the procedure was holding up great and the blood flow throughout his body was back to normal. His mitral and aortic valves are functioning normally and he is currently growing like a weed. Our next follow-up appointment is this June and we pray that he continues on the normal path. For those wondering, his twin brother Jude is also being monitored, but there have been no significant findings to this point.
Our experience with Heart Heroes has been one of extreme gratitude for being present at one of our most vulnerable moments. The care package we received in the hospital is one we will cherish for the rest of our lives. The encouragement, hope, and support that came from this package rejuvenated us and kept our optimism up during Joe’s stay.
When Joe wears his cape, we see strength in him. We remind him what it means to wear that cape: that he is a superhero to us and to future children who will go through what he did. It means he brought out the love and kindness of this home community of Yutan and it means he is going to be an advocate for one of the best organizations in the country – Heart Heroes!
